Issues Confronting AYA Oncology Patients

(From the May 2015 Issue of PediatricsOnline)

At an age when achieving independence and experiencing life milestones are most important, adolescents and young adults facing a cancer diagnosis must meet unique challenges. These challenges may point to reasons for the plateau in survival rates for patients with malignancy in the 15- to 39-year-old age range.

A review published in the Journal of Pediatric Hematology and Oncology looks at how changes in AYA oncology care are affecting these challenges and what changes are still needed.

The desire to be treated like an adult or, in the case of young adults, the idea that they are too old for a pediatric institution may influence where AYA patients seek care. Depending on the type of cancer, the choice between pediatric and adult institutions may influence survival rates.

Studies have shown that AYA patients treated on pediatric protocols for acute lymphoblastic leukemia (ALL) have higher survival rates. When analyzing the Surveillance, Epidemiology and End Results (SEER) registries’ data, the rapid decline in survival rate with ALL from 75 percent at age 16 to 48 percent at age 21 has been primarily attributed to the transition of patients from primarily pediatric centers and protocols to primarily adult treatment centers and protocols.

One factor that may contribute to relatively decreased improvement in AYA survival is poor clinical trial participation in this age group. For all AYA cancers, clinical trial enrollment differs drastically between AYA patients at pediatric centers compared to adult facilities. Patients being treated in adult facilities are far less likely to be enrolled in a clinical trial than those being treated in pediatric facilities, according to the review article. There is some evidence of a correlation between clinical trial participation and improved cure rates. The expansion of clinical trials asking questions specifically about AYA cancer biology and treatment is critical to improving outcomes for these patients.

Because of the varied and complex nature of the psychosocial aspects of AYA oncology, a strong support system is crucial for the AYA patient. However, at a time when AYA patients need their friends and peers most, healthy young people may become stressed and anxious about a friend’s diagnosis of cancer and may respond by avoiding the patient. Isolation, lack of confidence and worry about when (or if) to disclose their cancer status are among social stressors for AYA patients and survivors, says Dr. Yeager.

Additionally, cancer for an adolescent or young adult often impacts important life milestones. Finishing school, career planning, forming intimate and committed relationships and starting a family all may be disrupted by a cancer diagnosis. Fertility preservation is an important concern for all cancer patients, but particularly those in the AYA group. Despite published recommendations from the American Society of Clinical Oncology, research shows persistent deficits in the discussion of fertility issues with patients and subsequent referrals to reproductive endocrinologists.

Changes in physical appearance including skin discoloration, surgical scars, weight changes and hair loss can have a negative impact on the patient’s body image and sexual identity, according to the article. These effects are not only felt during treatment but also experienced into survivorship. To date, AYA survivorship research has generally focused on individuals who age into the AYA age group after experiencing cancer in childhood or early adolescence. Individuals who experience the onset of cancer in the AYA age group are less studied.

“It is important to remember that although overall cure rates have plateaued for this age group, 70% percent of AYA patients are survivors,” Dr. Yeager says. “In addition to the important work being done on improving AYA patient outcomes, survivorship research specific to this group is also very important and has been sparse.”

“Future research in AYA survivorship should focus on late effects of cancer therapy, including fertility preservation and family building, cardiovascular health, and cognitive dysfunction as well as quality of life encompassing psychosocial needs, access to health care and health risk behaviors,” Dr. Yeager adds.